Getting an organ to get simpler in Gujarat

Soon, human organs going waste despite being fit for transplant will be a thing of the past in Gujarat. The National Organ and Tissue Transplant Organisation (NOTTO) has given the nod for setting up of an organ and tissue transplant organisation in Gujarat. The proposal has also received approval from state health minister Nitin Patel and is expected to get the final go ahead from Chief Minister Vijay Rupani within a month. The state unit (SOTTO) will be set up at the Institute of Kidney Diseases and Research Centre (IKDRC) in Ahmedabad.

Along with this, the state will also bring in an organ donation policy The first State Organ and Tissue Transplant Organisation in western India came up in Mumbai in Maharashtra in February 2017. SOTTO, a central nodal agency that has to be set up in every state, regulates organ donation, maintains a central registry of organ recipients and authorises retrieval, transport and transplant of organs and tissues in the state.

Earlier this year, the regional organ and tissue transplant organisation (ROTTO), based in Mumbai, had put an embargo on inter-state organ transplant from Gujarat, citing lack of clearcut guidelines in the state. The lack of a proper policy as well as SOTTO resulted in several organs, especially the heart, going waste even as those in need continued to wait in desperation.

The decision to finally establish the SOTTO in Gujarat comes about seven years after the last amendment to The Transplantation of Human Organs and Tissue Act (THOTA) in 2011. The approval by health minister Nitin Patel, also the deputy CM, on November 5 has paved the way for the health department to finalise the rules and set procedures in place to formulate the policy. Patel could not be contacted for his comment.

Gujarat Health Commissioner Dr Jayanti Ravi said, “We have received permission from Delhi to form the SOTTO in Ahmedabad and it will be set up at IKDRC. Gujarat government will be passing a resolution to this effect shortly. The signing of MoU is under process.” Dr MM Prabhakar, medical superintendent of Civil Hospital and currently the Human Organ Transplant Authority (HOTA) of Gujarat, said that the final approval from Chief Minister Vijay Rupani could take up to a month.

Dr Vineet Mishra, in-charge director of IKDRC, a trust-run organisation at Asarwa Civil Hospital, said, “IKDRC has been selected as the SOTTO for organ donation and transplants. We are now hoping to step up our awareness activities for organ donation so that nobody is kept waiting for organs while they can be saved” IKDRC will maintain the central registry of organ donors and recipients and it will be in public domain to keep the system transparent.

Dr Mishra said, “We will keep tabs on where the transplants are taking place. At present, registries are maintained by all government and private hospitals which carry out transplants. That will lapse and all prospective recipients will be put on the central list.”

Why SOTTO

Speaking on the importance of SOTTO for a state, ROTTO (western region) director Dr Astrid Lobo- Gajiwala said, “SOTTO is responsible for maintaining common waiting lists for each organ according to specified criteria and distributing organs in a transparent manner strictly by the waiting list. This would ensure that there is no outof- turn allocation. SOTTO will also monitor organ donation and transplantation so that it happens as per the law (THOTA).”

If set up post-haste, Gujarat will become the second state to have a ROTTO in Western India. The one in Maharashtra is also a ROTTO. Dr Lobo-Gajiwala said, “Currently only Maharashtra has a ROTTO/ SOTTO. I understand that Indore (MP) and Silvassa (Dadra & Nagar Haveli) have already submitted proposals and these have been approved. The SOTTO at Silvassa will also serve Daman and Diu. Goa is also in the process of submitting a proposal.”

Gujarat government had sought her help in setting up SOTTO and has been in constant communication with her since 2017, said Dr Lobo-Gajiwala.

Hope for those in need of heart

Lalji Gedia, a mason from Surat, celebrated Diwali this year lying on a bed of a private hospital in Mulund in Mumbai. The 27-yearold’s heart functions at 10% of its actual capacity. “We have already come to another state to get his heart transplant done. Now we are stuck for funding,” rued Bharti Gedia, Lalji’s cousin. He has been on ventilator for the last month and has been unable to work for four years now.

His family neither has the correct information, nor the wherewithal to obtain funds for the expensive surgery. In Gujarat, while there is provision for subsidies in organ transplantation for those who cannot afford them, the heart is an exception. Currently, there is no subsidy for heart transplant, which also happens to be the costliest.

Nilesh Mandlewala, head of Donate Life, a Surat-based NGO that has been working for organ donation awareness, told Mirror, “Transplants are free for families under BPL. There is provision for 50% subsidy for poor families while transplants are free for school children under the School Health Programme. One can even seek fund from the CM and PM funds. However, there is currently no provision for subsidy for heart transplants.”

At present, a heart transplant in Gujarat can cost anywhere between Rs25-50 lakh depending on the medical condition, age and prevailing diseases the potential recipient is suffering from. A kidney transplant costs between Rs3-4 lakh. With the Gujarat government expediting the process of formulating the policy, there is hope for those in need of heart transplants. Dr Prabhakar said, “Subsidy for transplant is also in the works and should come out shortly after the establishment of the SOTTO.”

Dr Gaurav Dahiya, director of NHM Gujarat, said, “We are looking at giving subsidies for heart transplant as we want it to be accessible even for those who cannot otherwise afford it.”

Meanwhile, the hospital where Gedia is admitted has written a letter of recommendation for the family and has suggested they seek help from trusts, NGOs and through online crowd-funding platforms, but with only Rs3 lakh in their kitty, the huge sum of Rs20 lakh seems like a far-fetched amount for the family.

Another patient, currently registered at a private hospital in Vastrapur in Ahmedabad, has not yet informed his family of his condition but registered himself for the operation. On condition of anonymity, he said, “I have registered for the transplant but I have little hope, because I simply cannot afford it. While one hospital quoted Rs20 lakh, this hospital has quoted Rs15 lakh. I don’t know where I’ll get this amount from.”

No govt institute does heart transplants

Patients of heart failure are forced to go to private hospitals in absence of any government institute that does heart transplants. At present, there are only two hospitals registered as heart transplant centres in Gujarat—SAL and CIMS, both in Ahmedabad. UN Mehta Institute of Cardiology and Research Centre (UNMICRC), a government hospital, will take time to begin transplant procedures.

Dr RK Patel, director of the hospital, said, “We can only start after the infrastructure is set up and that will take at least till the end of January 2019, after which we will apply for registration. There will be an inspection after which we will get approval.” For transplants of other organs like kidneys, liver and pancreas, patients can go to IKDRC.

Surat’s Lalji Gedia is waiting for heart transplant in Mumbai

No sign of AIIMS yet

Even as the SOTTO has got the green light, the setting up of an All India Institute of Medical Sciences (AIIMS) in Gujarat is still in limbo since it was announced in the Union Budget 2017-18. Interestingly, SOTTOs were originally meant to be set up only in top-notch medical institutions like an AIIMS. In fact, the fi rst six SOTTOs commissioned to be set up, were all green-lighted to be set up at AIIMS in Bhopal (MP), Raipur (Chhattisgarh), Patna (Bihar), Bhubaneswar (Odisha), Jodhpur (Rajasthan) and Rishikesh (Uttarakhand).

However, since this did not pan out, SOTTO permissions were given to super-specialty medical institutions. On states now being able to have SOTTOs without an AIIMS facility, Dr Vimal Bhandari, retired director of NOTTO, told Mirror, “We had planned that SOTTOs would be set up in each state so that organ donation and transplant are regulated. Originally, we had planned them at six AIIMS, but since that did not happen, we had started giving permission to other medical colleges to operationalise SOTTOs in Jaipur, Patna and so on.” NOTTO itself, and all fi ve ROTTOs—Mumbai, Chennai, Kolkata, Chandigarh and Guwahati – that look after clusters of states, are at non-AIIMS institutes.

Ease of transplantation

IKDRC has carried out about 5,500 kidney transplants since 1984, 300 liver transplants since 2008 and eight pancreas transplants in the past three years. It is the only centre for pancreas transplant in the state. Private institutes in Gujarat have also carried out kidney and liver transplants. On the other hand, there have only been six heart transplants in the state. As many as 17 inter-state heart transplants have been carried out where donor hearts from Gujarat have been sent to other cities for transplant either due to lack of blood-group match or lack of funding for recipients. Gujarat recently had its fi rst female heart donor. The majority of heart donors, 19, have come from Surat.

We have received permission from Delhi to form the SOTTO in Ahmedabad and it will be set up at IKDRC. Gujarat government will be passing a resolution to this effect shortly. The signing of MoU is under process

Jayanti Ravi, health commissioner

The final approval from Chief Minister Vijay Rupani could take up to a month Subsidy for transplant is also in the works and should come out shortly after the establishment of the SOTTO process

Dr MM Prabhakar, HOTA, Gujarat

IKDRC has been selected as SOTTO for organ donation and transplants. We are hoping to step up awareness activities for organ donation so that nobody is kept waiting for organs while they can be saved

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